'Butterfly child' Jonathan Pitre on his way to Minnesota for treatment

Andrew Duffy, Ottawa Citizen, Ottawa Citizen08.18.2016

Tina blows a kiss to her family as the pair leave the driveway. Butterfly child, Jonathan Pitre, says goodbye to his sister and family as he leaves his Russell home Wednesday (August 17, 2016) for a bone marrow transplant operation in Minnesota. Jonathan, 16, who suffers from EB, will be travelling with his mom, Tina Boileau, who will be his transplant donor and will be with him for the next year in Minnesota for the groundbreaking, but risky, procedures that no other Canadian has ever undergone. Only about 30 transplants have been done on EB patients and about a quarter didn't live through them. Some others didn't have the intended result, but about half were able to relieve the horrible symptoms associated with EB. Julie Oliver/PostmediaJulie Oliver
/ Ottawa Citizen

Tina Boileau cries as she leaves her daughter, and Jonathan Pitre's younger sister, Noemy, behind in the driveway. Pitre bid goodbye to his sister and family as he left his Russell home Wednesday for a bone marrow transplant operation in Minnesota.Julie Oliver
/ Ottawa Citizen

To steel himself for the year-long journey that began Wednesday, Jonathan Pitre has been going over the hard calculus that underpins his decision to pursue a high-risk, high-reward treatment in Minnesota.

Pitre, 16, suffers from a rare form of Epidermolysis bullosa, a blistering skin disease that gets worse with each passing month. He left for Minneapolis mid-afternoon Wednesday to pursue the only treatment available to him: a stem cell transplant that could arrest the advance of his disease.

The procedure involves chemotherapy, radiation and up to a year of recovery.

“This is going to be a long and difficult journey, but when we come back it will all be worth it,” Pitre said in an interview on the eve of his departure. “I’ll gain more years than the year I lose. If I don’t do this, I’ll pass away earlier than if I do this procedure.”

Pitre has been reminding himself of that argument in order to squelch both the fear of the unknown — and the all-too-familiar terrors of a hospital. Ever since he was a child, Pitre has associated oxygen masks with pain and claustrophobia.

“It’s so hard not to be scared of it,” he said, “so I kind of engrave those reasons in my mind to give me more courage to do it. It could have been cancelled if I really wanted to … but I think of those reasons that I engraved in my memory to convince myself, and think, ‘OK, we need to do this.'”

Pitre and his mother, Tina Boileau, set off in their truck Wednesday afternoon. They’ll be driving five to six hours for the next three days with overnight stops in Espanola, west of Sudbury, and Escanaba, in northern Michigan.

Pitre will be sitting in the front passenger seat with special cushions designed to ease the pressure on his back and buttocks, where his wounds are particularly bad.

“I think I’m ready for it,” said Boileau, who has taken a year-long leave of absence from her job with the federal government. “You’re never really ready for it, but I’ve kept the mentality that we have to leave to come back.”

She’ll be living in Minnesota to care for her son, and perform the four-hour bath ritual required every second night to remove and re-apply his bandages and dressings.

Pitre’s disease has continued to worsen. He has spent much of the past few months in bed in an effort to allow the wounds on his back and buttocks to heal.

“It’s another notch worse than it was,” he said.

Still, Pitre has tried to spend quality time with his family and his dog, Gibson, before his departure. Last month, he hosted a charity golf tournament that raised $44,000 for the EB charity, DEBRA Canada. He has taken Gibson for long walks in his motorized wheelchair, and has spent hours rubbing the Boston terrier’s belly. “Definitely, he knows something’s up,” said Pitre.

In Minneapolis, Pitre will begin a battery of tests on Aug. 22 to ensure his heart and other organs are healthy enough to withstand the stem cell treatment.

That treatment is expected to begin in late August with a full week of chemotherapy and radiation to weaken his body’s immune system so that it doesn’t reject stem cells harvested from his mother’s bone marrow. Boileau will also donate blood and skin for the procedure.

Pitre will become the first Canadian to take part in the ongoing clinical trial operated by the University of Minnesota’s Dr. Jakub Tolar, a pediatric transplant specialist who has developed the groundbreaking treatment for the most severe forms of EB.

Ontario’s Ministry of Health will cover the cost of the $1 million treatment — it’s only available in Minnesota — while Boileau will have to pay for the family’s travelling and living expenses in the U.S.

The procedure is risky and it doesn’t work for everyone. But two-thirds of the survivors have experienced life-changing improvements: tougher skin, reduced blistering and better wound healing. Eight of the 30 children who have undergone the procedure have died, most from infections.

The EB charity, DEBRA Canada, will be offering financial support to Pitre and his family during their year-long stay in Minnesota. Readers can donate to DEBRA Canada through the charity’s website at debracanada.org.

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'Butterfly child' Jonathan Pitre on his way to Minnesota for treatment

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